Jen Hyde, BFA, MFA - Preventative Measures
NOTE: This article originally published as a Patient Viewpoint the American Heart Association journal, Circulation: Cardiovascular Quality and Outcomes
I am sitting in Bryant Park, on 42nd Street and Fifth Avenue in New York City. It is one of the first spring days in April, and The Rose Main Reading Room at the New York Public Library, to which the park is adjacent, remains under construction until November. But I do not mind because this park is a small reprieve in the middle of Manhattan, just a few blocks away from the university hospital I went to earlier this morning to have a Holter monitor adhered to my chest.
As a 30-year-old American woman with Tetralogy of Fallot, a congenital heart defect that can cause 4 anomalies to develop in the heart, I was born without a pulmonary valve and have undergone 2 open-heart surgeries to attend to this problem. At 25 years, I received a bovine heart valve whose life span will not succeed mine, and because of this, I experience the medical advancements of devices like Holter monitors firsthand.
I remember my mother scrubbing the tape residue from this wearable EKG off of the sides of my body as a child. The gray adhesive would stick to my skin for days afterward, much like the powder blue eye shadow in her makeup case. She never used it, I loved it, and sometimes she let me play with it. Both of these products took at least a day and 2 baths to completely wash away because a child’s skin is soft and porous. My grown-up maintenance routine includes regular body waxing and so my skin has grown accustomed to strong adhesives and the pain that comes with washing them off. Wearing the Holter monitor is part of my maintenance routine, and I have always liked the cyborg appeal of the cables that lead into the recorder on the device. This morning I marveled at it; it is slightly larger than my thumb. As a child, the Holter monitor resembled a portable television and came with a strap, and to fight against the physical discomfort of carrying a heavy object, I wore it like a purse to complement my blue eye shadow.
The Holter monitor I received this morning cost me ≈$300. After insurance, which covered 80% of the total cost, I felt I was left to choose between buying groceries for the month or participating in the necessary test that enables me to understand how my condition progresses. “We want to take preventative measures, not reactive ones,” my cardiologist tells me when I see her. It is excellent advice, and I am a fortunate woman to have it.
My mother is an Indo-Chinese immigrant, and my father is a first-generation-born German-American. Between the 2 of them they hold 1 bachelor’s degree, which my father obtained as a response to the draft card he received in late 1960s. They supported me through graduate school and taught me to be an adult who makes responsible decisions, not reactive ones. But I chose a more difficult route. As a poet and visual artist, I have a nontenured academic job in the humanities. I am employed full time by the same institution that researches my heart condition, and my doctor is an excellent female cardiologist who specializes in congenital heart defects and words of wisdom.
Yet because preventative measures to her means undergoing many tests for me, I have had to develop my own procedure with the financial aid and admitting offices at my employer’s hospital. I show them my pay stub, I receive a look of shock, and I wait 30 days for the bill to be dismissed from my responsibility. Today, this is part of my standard operating procedure to prevent financial disaster, but building my own procedure was not so easy.
A few months ago, my cardiologist decided that I should undergo a stress test as part of my annual checkup routine. She was interested in setting up a baseline figure for my cardiovascular strength. When I arrived at the test site, I was told that because my insurance would not cover the test I would need to pay the hospital $700. What began as a minor inconvenience on a Wednesday morning became the sum of my monthly living allowance. I was given instructions to call the hospital’s financial aid and admitting office and to do so quickly because missing my test for any reason would still result in the issue of a bill. I stood in front of the elevators that would lead to the stress test floor and waited for the financial aid associate to pick up her phone. Between this preventative test and my paycheck, my tears welled and my hands shook. I saw a picture of my life at 70, and I wondered if it was a mirage.
In my early twenties, my friend Jake taught me how to shotgun beer. One summer night in Brooklyn, the 2 of us indulged in this activity outside a small convenience store. A policeman saw us and gave us each a citation for drinking alcoholic beverages in a public street. At my civil court hearing, the judge read my citation aloud and asked, “What is shotgunning?” But before I could explain to him the subtleties and nuances of using one’s house keys to poke a hole into a skillfully shaken carbonated can, he dismissed the case. I was a young woman with a promising future. Or, I was a young woman who knew little about life.
As I age, my sex does not work so easily to my advantage, but my sex has taught me how to perceive what I can have and how to pose the right questions to get what I want. I do not think myself cunning, nor do I think that routinely filling out financial aid forms is what my doctor had in mind when she wrote up her list of preventative tests, but in a system that requires that every American citizen have healthcare, it seems to me that we have not yet distinguished between preventative healthcare for healthy people and preventative healthcare for folks like me who live with heart disease or other chronic illnesses, whose lists of annual tests and preventative procedures read more like instructions for assembling The Endeavour than a pamphlet about healthy eating.
For now, I will take the additional steps. It seems I have the time on my hands. In fact, I feel myself getting a sunburn in the park. But for the folks whose luxuries are more limited than mine, who do not even have insurance that allows for regular visits to specialists, who must make a choice between a surgery and exhaustion, I am not sure that asking for help will get them as far, despite the medical research that has advanced in our nation. Now that I am months away from the elevator ride to my stress test, I see myself at 70 often. It is everything else that appears more like a mirage.
Tell us: Are you an adult survivor of CHD? How has it shaped your view of health?
Related Terms: heart attack|heart failure|heart disease/congenital heart defect|adult|prevention|education